Has anyone else purchased Harvoni with no insurance or Gilead Patient Assistanc?

[slw304]

Denied by Insurance for treatment (due to liver biopsy F1.. F3 required for approval) and also denied by Gilead Patient Assistance Program (total married income slightly over 100k).  Now having to pay cash to purchase.  Has anyone else been forced into this scenario?  and if so do you have suggestions to find medication for lowest price possible?  I have spoken with Gilead Support many times... they will not help me.  My symptoms from Hep C are too uncomfortable to continue to live this way long term. 

[slw304]

Looks like I'm the only one.  I guess I'll go pour a drink now and start working on that F3 status so that I can qualify for assistance.  Thanks United Health Care and Gilead Support Path. 

[DisabledHepcat]

They must be writing new rules to qualify, I got approval last year (November) did not start until I had all 3 bottles since they only sent one per month and wasn't sure if I was going to get all 3 due to the 3rd bottle falling into this year.Finishing my treatment this Thursday (12 weeks) No Fibrosis proof needed. I have United Healthcare also but the Medicare part D so maybe the money doesn't come out of their pockets since they are just carriers for Medicare and the money comes from the tax payers.
Don't drink yourself to F3, I am sure the prices will be coming down before you get there. But if you really want to may I suggest 100 proof vodka with Tylenol chasers LOL

[seekir]

I may be in the same boat. F1, and doc thinks I'll be denied. Haven't had a definitive "no" yet though. Need a drinking buddy?

[sawsome]

Trust me seekir even as a bad joke you dont want F2 3 or 4. Please dont drink even 1 drop. Hell dont even use mouthwash with alcohol in it. The pace at which Hep C kills your liver is fast enough. I do wish you the best in getting Harvoni and we all know how hard (and stupid) it is to sit and wait for the cost to go down. I've been going though this for 40 years or so (no ones every sure exact date) but thats what the doctors say Ive been chronic for a long time. Im F4 now and I will get it once I get back in the states. Hang in there bro cause they DO have a cure now. Keep doing what the doctors say to do and you will be fine. Head high shoulders back as my Dad use to say. Best of Luck John

[Sam1224]

Just go out and buy an insurance policy that covers the medication. 6 months of any policy is going to cost less than a course of treatment.

[slw304]

Hoping no one is taking this prior conversation seriously... of course we aren't going to drink ourselves to F3.  If we didn't value our livers we wouldn't be on this forum.  It feels great to vent a little, however,  and make light of the situation these companies are putting us in.  I had a good laugh at the Tylenol chasers, suggestion.  And yes, Sam1224, I do have health insurance.  Paid a fortune for United Healthcare policy for a family of 4 for more than 12 years.  They have deemed this treatment "not medically necessary"  for those of us under fibrosis F3.  And Gilead Support Path has decided if your gross income is more than 100k you can afford to pay full price for this medicine. 

[apache]

Paid a fortune for United Healthcare policy for a family of 4 for more than 12 years.  They have deemed this treatment "not medically necessary"  for those of us under fibrosis F3. 

That's because the #1 corporate objective for UHC is to "maximize shareholder value", for UHC shareholders 

That being said, one subtle thing that I just recently learned is that (for those of us who get UHC through our employer), what Rx UHC will cover is 100% dictated by the employer (via UHC's formulary agreement).  UHC has a different formulary policy for different employers.

In other words, if you work for Company A and have UHC insurance, then UHC will not cover Harvoni (unless F3 or worse).  But if you work for company B and have UHC insurance, then UHC actually will cover Harvoni without concern about F-score.

That's why you'll see (in this discussion forum) stories about F1 people who actually did get Harvoni via UHC (often without even needing an appeal).  And they you'll read other stories about F1 people who were denied Harvoni by UHC, due to UHC's "F3 or worse" criteria.   

Regarding the 100k combined income ithreshold at Gilead, it really sucks.   They should have a gradual taper of their assistance offerings, not a huge step function.  In other words, a sliding scale, for those who exceed the 100k income level.  One thing I was told by Support Path is that they have a "cash price" for those exceeding 100k:   a $9k/month discount.   That reduces the $32k/month down to $23k/month.   Still extremely expensive, but it is better than nothing.

But before going the self-pay route in the US, you may want to consider getting it via another country.  Gilead Sciences is giving phenomenal discounts to certain countries (eg, $10/pill in Egypt, India, etc).  Perhaps it might be worthwhile to try getting the Rx via that route?   It's not without danger (counterfeit product), but may be an option. 

A slightly less risky route might be travelling to Canada/Mexico, and getting it there.   In Canada the discount isn't that great, but based on past anecdotal evidence, Mexico seems to typically get a very steep discount on pharmaceuticals.  I've heard numerous stories about senior citizens going to Mexico to fill their Rx.

Another possible solution, if perhaps you're above the 100k threshold due to a spouse's income, is to have the spouse not-work for a year (or however long it takes to reduce your FY 2015 combined income to < 100k).  That would seemingly enable you to get the magical $5/month rate from Gilead. 

Along those lines, another option is to get a divorce for a year.  I've actually heard of families doing this (in other scenarios, not Hep C), so that they could meet the (low) income thresholds for medical accounts.  They make it sounds like it's just a paperwork issue - they get a "divorce", yet continue to live together as a family.  Kids don't even know they're divorced.   After they get the Rx, then they get "married" again.

Good luck.

[Sam1224]

I understood that you are insured. Switch insurers? Add an additional policy for a year? As Paul Simon said "there must be 50 ways to leave your lover".
I don't see why you would feel any loyalty to the company that denied you. I am currently paying $1200.00/mo for COBRA because I didn't want to rock the Harvoni boat midstream. And if I quit COBRA I can't get into my employers insurance till open enrollment in December. This is because I would be "voluntarily" dropping insurance. My big mistake was not researching things better and just going on the COBRA insurance. Luckily, without my wife's income I will slip under the income threshold and be eligible for the free Harvoni.

[seekir]

As slw304 says, no one is seriously contemplating deliberately "achieving" higher F-levels of liver damage in order to qualify. Not sure any of the other suggestions offered (thanks anyway) apply to my situation. I have to say I'd hoped that the 15 years of total alcohol abstinence and other measures I've taken to minimize liver stresses would have produced uniformly beneficial results. As a 1a genotype with few symptoms of liver disease and initial ultra-sound images that showed no sign of liver damage, I decided back when I was diagnosed that waiting for a more effective therapy was my best option. I altered my lifestyle, diet, and took other measures I hoped would limit liver stresses. I think that for many like myself the fact that insurance companies seem to be withholding the new therapies like Harvoni from individuals who have taken steps to maintain their health is a bit discouraging. Hence the jokes.

Some of my speculations on why newer therapies are not being granted to patients showing limited signs of liver disease:

1. Drug and capital supplies are limited and insurance companies feel it's best to limit service to more desperate patients and fund therapies for others only when their condition becomes more critical or supplies and costs improve.

Some more disconcerting possibilities:

2. Drug companies like Gilead believe (with or without justification) that mercenary policies keeping their prices elevated will maximize profits.

3. Insurers are stalling when possible till changes take place which will reduce their costs. Changes like (the previously mentioned) reduced drug prices; legislative measures which remove "pre-existing condition okay" clauses from current U.S. law and compel clients with existing illnesses to pay higher premiums; patients unwilling to risk further liver damage will decide to assume costs of therapy themselves rather than wait for reluctant support from insurers who resist patient applications for the drug.

[Sam1224]

I think you hit it with all 3.

[morning_glory]

Denied by Insurance for treatment (due to liver biopsy F1.. F3 required for approval) and also denied by Gilead Patient Assistance Program (total married income slightly over 100k).  Now having to pay cash to purchase.  Has anyone else been forced into this scenario?  and if so do you have suggestions to find medication for lowest price possible?  I have spoken with Gilead Support many times... they will not help me.  My symptoms from Hep C are too uncomfortable to continue to live this way long term.

Did you already go through the whole paperwork process with Support Path? Like documenting your expenses, etc.?

I hope someone will be able to give you helpful advice. I did read where someone on this forum appealed Support Path's denial. I'm sorry I don't remember the details, though.

Don't give up... The process can be very long & frustrating!

Blessings,
MG

[slw304]

Morning Glory, I did document income and expenses for support path.  I had called them prior to submitting my application and was told to document expenses and include an appeal letter.  I did both explaining why I could not afford to pay full price for Harvoni and documented my Hep C symptoms and the toll they were taking.  Rep called to tell me I was denied and said they rarely approve exceptions for those over 100k gross.  No idea why they suggested I waste all the time in submitting the paperwork and waiting for a response.  I asked at the time and called again requesting any type of assistance they could offer beyond the standard co-pay coupon which is worth around 23k.  Both times I was told there is no other offer of support available.  Also, for those considering the self-pay option remember the 1125/day price is the wholesale price not retail.  Pharmacy prices are actually higher. 

[Debula]

What is the income threshold for Gelead?  How much less did you need to make?

[BDK]

The combined household income for Support Path is $100,000.  We are slightly over that and applied and were denied even though we submitted expenses etc.  However, you can appeal Support Path's first denial.  I wasn't told that by the Path person who called me, but I insisted on speaking to a manager, and he told me I could appeal.  I am currently waiting for the outcome of that.  So if you havent appealed the denial based on your income, give it a shot.

[Amj1951]

Hi all... I think this is just plain sad! If you have Hep C THAT should be all they need to know because whether it takes a month or your lifetime there is no good outcome from it. My Liver doctor was telling me its getting harder and harder to get people approved. I had noticed a number of people were having the ribavirin added at the last 4 weeks and she said even that is hard to get approved. With that said my friend said he saw an article that so far this year 25% or more claims paid by insurance companies are for patients with Hep C and as we all know they are only in business to make money.

I just hate for those of you who having so much difficulty getting the medication. It makes me feel even more thankful I was able to get it as easily as I did and luckily I only have a few more days until my 12 weeks are finished.

My prayers are with all of you still waiting to be approved!
Meredith

[SIXFOOTFOUR]

With an estimated 3.2 million people in the US that are Hep C positive and now with new meds that have high success rate and minimal side effects Im sure that it will be a huge cost to insurance.
 
Many of us have waited due to the lower success rates and side effects of previous treatments. I know for me that was the case I was approved 2 times in the past 10 years but felt that for the chances of success and the side effects that might endanger my job if I was off work I declined. But as soon as I had my 2015 follow up with my doctors they immediately offered Harvoni and as I've said a couple of declines and an offer to use Viekira instead but stuck it our and got Harvoni.

[Mugwump]

The unfortunate part of the equation is that most likely organized crime will start to latch on to the world wide market for Harvoni. We do not know how many are actually infected in places like Russia and even here in North America in places like Mexico, Central and South America where the drug lords with gobs of cash rule the roost.

There are even many right here in the US and Canada, who have undisclosed incomes from criminal enterprises that can use their wads of cash and criminal influences to get meds or even just steal them for profit. And this is the problem with Harvoni being priced so high just to appease the share holders of Gilead Inc.

One method organized crime could use is bribery for the purposes of the interception of meds during delivery and then substituting knock off pills in the real med bottles. I am sure that this drug will be cloned because it is so expensive. 

Organized crime has more cash than most insurance companies and I have no doubt that the current high cost of Harvoni is attracting attention from today's sophisticated organized crime groups. Especially from ones that have relatives and associates that have HCV.

What would be a real miracle is if the WHO under the UN could step in and collectively produce and distribute Harvoni while appeasing the owners of the drug patent. Then perhaps we could truly rid the world of this debilitating disease. Either that or have the Bill Gates of this world suddenly see the light and fund the eradication of this disease the way many are fund raising and spending even greater amounts for the eradication of AIDS.

The truth is that as HCV progresses over the life time of an individual it costs more in lost productivity to society long term than it would cost to control the disease. Especially if drugs like Harvoni can cure and eradicate this insidious disease in the long term.

[mario555]

Just my 5 cents on self-financing the treatment... I live in Canada. The price at the pharmacy for 1 bottle is 26,000. You can get a discount from the pharmacist down to 25,000 so 75,000 canadian dollars. At the present exchange rate of 1.3 your cost would be $58,000 US dollars. Finally, you might be able to get a tax refund on your medical expenses (available for Canadians) which would lower the final cost by another 30%. Would that work?

[2rivers]

Mario: I also live in Canada. If you go through Momentum Insurance (division of Gilead) they will subsidize the cost for self-pay. They offered me a 20% discount, or about $62k for a 12-week treatment. I was told that I qualify even though family income is over $100k.

[mario555]

Two Rivers. I agree with your statement. I received help from Momentum Gilead and I have only nice things to say about them. Their philosophy seems to be: "Do your best with your insurance and we will help you with the rest!".
My comment was directed to an uninsured American who wants the treatment. If you are F3-F4 in your liver assessment and are not insured, the person is in trouble and must develop a "survival plan" that can be put in place in a couple of years max..  My comment referred to "How much would a treatment cost with no help whatsoever". Finally, in the US, the help from Gilead "is income dependent" as much as I know. This doesn't appear to be the case in Canada. Also, the $100,000 max is right under where many patients are with 2 salaries. At that level you make too much for any kind of help but not enough to afford the medication!!
As a cautionary note, I have no idea what are the laws surrounding "pills tourism" ☺

[sapphire101]

Hang in there Mario.
Many forum members started just where you are and many had multiple rejections before getting approvals. I truly believe that within a year or two there will be treatment for all HCV as recommended by the American Liver association. More drugs will be approved soon and that will continue to drive the prices down.



BDK glad to hear you are still in the game. Since you are just over the 100k limit what about cutting back on work to meet the quota?



Some of the ideas presented here are extreme: divorce, quitting jobs, going out of the country. I totally get why we are going there though and I am very glad I did not think of these before my approval came through because I may have chosen one of these paths to get treatment.
One of the most misunderstood areas about people who are living with chronic hepatitis C is the urgency of treatment.
We have always been desperate to get rid of this virus, these feelings are not new, but we have all been holding back our feelings because it was really no use when there was no hope. Now, we have SVR cure available and we want it. Most of us have been waiting a very long time and it is not OK to make us wait longer.